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I have Crohn's disease AMA
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User1213461 · 01/09/2022 20:35

Not sure if this will be of any interest but thought I would post and see Smile

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bathshebaeverbusy · 01/09/2022 20:40

I sympathise. Can I ask about when were you diagnosed and have you needed surgery?
If you have flares, are you aware of triggers?

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Swedecabbagelime · 01/09/2022 20:45

I also have crohns. Have you found any foods make you flare? Stress is my biggest trigger.
what medication are you on?

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mynameischloe · 01/09/2022 20:46

Have you found any techniques to help you take your mind off when you're having a flare? Or to help prevent the anxiety of when you'll flare again. I have a chronic condition which affects my whole day, one minute 2/10, next it's 10/10 and I struggle to take my mind off it.

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User1213461 · 01/09/2022 20:56

bathshebaeverbusy · 01/09/2022 20:40

I sympathise. Can I ask about when were you diagnosed and have you needed surgery?
If you have flares, are you aware of triggers?

I was undiagnosed despite repeatedly presenting at my GP until my bowel perforated and I required emergency surgery (a bowel resection). The surgeon diagnosed me and I was aged 22. However, following surgery my pathology report felt it was more in keeping with appendicitis so my diagnosis was retracted until I presented with symptoms again 5 years later and was formally diagnosed then, aged 27.

My only trigger is stress and lack of sleep that is associated with stress or overwork.

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User1213461 · 01/09/2022 20:57

Swedecabbagelime · 01/09/2022 20:45

I also have crohns. Have you found any foods make you flare? Stress is my biggest trigger.
what medication are you on?

I haven't noticed any issue with foods and I do try to eat fruit and vegetables every day, though I know this doesn't agree with everyone with IBD. Stress for sure is my biggest trigger! I take azathioprine daily and that's all! It's the only medication I have ever taken for it (except short stints with steroids on two occasions).

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User1213461 · 01/09/2022 21:01

mynameischloe · 01/09/2022 20:46

Have you found any techniques to help you take your mind off when you're having a flare? Or to help prevent the anxiety of when you'll flare again. I have a chronic condition which affects my whole day, one minute 2/10, next it's 10/10 and I struggle to take my mind off it.

I used to put up with far more pain than was normal or acceptable. I am quicker to present at A&E now if required for steroids but only had to do this once in six years thankfully. In a full blown flare I am unable to work or really move to be honest. My strategies are buscopan, lying in bed, watching films, massaging my stomach. I also have laxatives but not used them before but was previously given them in hospital so thought I would buy some!

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GrannyAchingsShepherdsHut · 01/09/2022 21:01

No q's from me, but some solidarity! I've Colitis (or I did, till they whipped the bloody thing out last year) sorry to hear you had to have emergency surgery - must have been scary.

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User1213461 · 01/09/2022 21:03

GrannyAchingsShepherdsHut · 01/09/2022 21:01

No q's from me, but some solidarity! I've Colitis (or I did, till they whipped the bloody thing out last year) sorry to hear you had to have emergency surgery - must have been scary.

I was poorly for what felt like ages leading up to the surgery so in some ways it was a relief to have an answer and get it fixed! But also scary and fears I would die from it! My dad also has ulcerative colitis. I hope you are doing better since your surgery Flowers

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GrannyAchingsShepherdsHut · 01/09/2022 23:01

Thanks OP, yes, I am. I was pretty much housebound by the time it was decided surgery was the last remaining option.
I've got my life back, it's amazing Grin

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0utForAWalkBitch · 01/09/2022 23:49

Interesting as my daughter (9) has just been diagnosed with IBD after blood/stool tests. Awaiting a referral to gastroenterology but wondering what life has in store for her. No family history so it’s all new.

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User1213461 · 01/09/2022 23:59

0utForAWalkBitch · 01/09/2022 23:49

Interesting as my daughter (9) has just been diagnosed with IBD after blood/stool tests. Awaiting a referral to gastroenterology but wondering what life has in store for her. No family history so it’s all new.

I'm so sorry to hear this, 9 is very young. I had major problems due to not being diagnosed. However since diagnosis things have been so much better. I have not required any further surgery in 11 years. I am married, have travelled and work full-time with a degree, masters and PhD under my belt Smile

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bathshebaeverbusy · 02/09/2022 07:33

My daughter was diagnosed at 12. Went through enteric nutrition, steroids, infliximab and azathisprine but nothing kept it at bay. Weekly Humira injections though transformed things for her and keeps things manageable. Auto immune conditions can cause other things : she gets painful joints and bleeding gums in addition. Stress and tiredness are her major triggers but it had it stopped her going to Uni and doing really well. Good luck to you and you daughter, my advice would be that the squeakiest wheel gets the oil, so keep on pressing for what you want for her.

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HGC2 · 02/09/2022 07:36

Me too, agree that stress is the worst trigger! I’m on weekly amgevita injections after surgery last year and am in remission now, hope you are well x

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Londonnight · 02/09/2022 08:11

My son was diagnosed with crohns when he was 8. He had had symptoms for at least two years before this, but we were dismissed as over reacting by GP's.
Eventually referred to a paediatric gastroenterologist. After scopes found massive inflammation all through his body. Started straight onto steroids, azathioprine and pentasa. He has done modulen feeds at least three times. Very tough for a child doing that.

After 5 years the aza on it's own stopped working and he has been on infliximab infusions since he was 13.
We have had many ups and downs and hospital admissions over the years. Taken off aza 4 years ago when he was transferred to adult care.

He is now almost 22, been at uni for the past year, works full time. Everything crossed, he is doing really well and not had a flare up in a long time

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